Monday, November 9

A sigh of relief

We got to Texas Children's Hospital early so we had time to grab a quick lunch.
We were at peace knowing we'd talk through all of the possibilities.
Many prayers have been said for this sweet girl.
After lunch we headed back to the hospital. 
When the doctor started talking about A's results he explained why she had hypothyroidism and the genetic documentation said hearing loss could be linked to those genes as well.
We both said what about the tumor syndrome?!? He looked puzzled. I showed him the paperwork we got from the insurance company on Friday and he said he was sorry it was a coding error. Praise God!! We breathed a BIG sigh of relief!!
He said there was no clear reason for the elevated CK levels. He wants to consult Ainsley's Iowa neuromuscular doctor since some thyroid/hearing disorders have low tone associated but it is very rare. He did say her thyroid was very enlarged so we will follow up with her Waco Drs for an ultrasound.
He wanted to check her CK level today and monitor it a couple of times a year to see if her muscle is still leaking into her blood as it has been at slightly elevated levels. We got the blood work done and hit the road back to Waco.
We did celebrate with a Dr. Pepper slushy!
We are forever thankful for this great news!!

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